My application for the ALS drug Relyvrio was shot down by insurance a few days ago. There is no appeal process because patients who are on ventilators are not included in clinical trials. That means insurance can say it doesn’t benefit us. It was very hard to get that news. They say I’m in the end stages, but that’s not true. Even though my ALSFRS-R score is 1- the lowest possible score – I’m very much alive.

I’m starting to understand that I will never have access to any ALS drugs, that I won’t outlive my mom like I promised her, that I will die young and leave Evan a widower long before his time.

Right now I’m depressed, but my fear is that I will become bitter. I can’t let that happen, though. Then ALS would truly win because I wouldn’t be me anymore. So how do I combat bitterness? I keep hope that I will have enough good years left to make precious memories with my loved ones. I travel down memory lane frequently, enjoying and organizing old photos. I try to find joy in the little things like my dog Pickle’s happy dance, the Christmas lights in our bedroom year round, and the beautiful music Evan makes when he plays his guitar.

Not today ALS. Not today.